Renal PatientView

December 2005 www.renalpatientview.org

Renal PatientView (RPV) has been going in earnest for about 6 months now. This newsletter is both a progress report for centres that have joined, and further information for centres that don’t yet have it.

What does RPV do?

It puts a selected set of data from existing electronic patient records onto an Internet website that is accessible via an individual login.

It shows results (refreshed daily), diagnosis, and selected information links according to diagnosis (EDTA code) and treatment type (HD, PD, TP, or none of these). Any kind of patient can enrol. The RPV website can be accessed from anywhere in the world with Internet access.

Where is RPV available?

RPV is already installed in 10 centres covering 15 individual renal units. 8 of these have started enrolling, and about 700 patients are online with 100 patients being added per month. This will rise as the programme of new installations gathers pace (see map).

Available Installation timetabled For a timetable, see www.renal.org/rixg/units.html.

The official launch of RPV in October in London. Patients, the steering group, and representatives from the DoH, NKF, KRUK, the three UK Renal Associations, and our contractors.

Patients’ views on Renal PatientView

The reception has been very good. “The concept is fantastic and hugely advantageous to me and my husband – we undertook a live donor transplant seven weeks ago.” “Congratulations to the Renal Department for giving patients such access to their results. I hope it leads other departments to do the same.” “We received the sign on details today. We've viewed and are really impressed.” We’ve had a few requests that more information might be shown, but otherwise only favourable comments. It’s been noted that some teenagers are engaging with their illness in a way they haven’t before. One is witholding the login from his mother to ‘prevent her worrying’. But many patients in their 70s and older have enrolled.

Staff experience

RPV was developed primarily for patients, but from the outset it was hoped that there would be benefits on both sides, including better compliance, perhaps fewer calls about test results, and the ability to look up a patient’s results remotely. We don’t know about compliance yet, but the other benefits seem to be real. Fears that more information might lead to more phone calls and longer clinic appointments have not been realised. Feedback has generally been very positive, and useful – to correct phone numbers, GP details, diagnoses. The system seems to lead to greater patient trust, not the opposite. A formal evaluation project is getting under way.

Recruitment

The pattern in a new centre tends to be a cautious start followed by consistent growth. The chart shows progress in centres that have started enrolling.

Recruiting tips Enrol senior medical staff as Staff Users from the beginning – they can demonstrate the system to others (including patients), and are the most likely to exploit the remote viewing ability when on call, away from base, etc. Involvement of senior staff probably stamps the project with senior blessing and approval. In the fastest recruiting centre, enrolment was in the hands of just 2 consultants.

Posters and leaflets Just putting up posters will get a few enquiries but a lot of patients will postpone following it up, or never do it. Keep a pile of leaflets and enrolment forms on outpatient desks and at the appointment re-booking desk.

Patients can be the best advocates. Transplant patients are often particularly enthusiastic. Wander round the dialysis unit occasionally with a handful of leaflets and chat to people. Take up may be >70% when approached this way. The most unexpected people are keen to sign up, often using their son/daughter/grandchild’s expertise.

Local advocates – e.g. nurses on dialysis units, phlebotomists in clinics, etc

Selling points: look up results of creat, K, phosphate, URR; info available at non-renal clinics; holidays; keep family in touch; keep and read clinic letters (in some units).

Is it a lot of extra work?

No extra data entry is required – use is made of data that is already stored for registry reporting. Patient and staff enrolment are simple and the processes are carried out by individuals nominated locally. Enrolling a new patient who has signed up takes someone (any grade) about 6 minutes when a few are done together.

How do we join?

Proton centres – you can probably join very soon if you would like to. Contact us (see below).

Information systems other than Proton – RPV is designed so that it is quite easy to interface with any system from which the information can be extracted. Progress is encouraging. CCL (Clinical Vision) would like to add an interface to version 04, rolling out ‘during 2006’; Renal Plus, work in hand; Fresenius – keen to write interface, information provided; Kings system – installing of new system about now, keen to add RPV when in place. All these providers seem signed up to joining during 2006, and we hope that the terms will be identical or very similar to those for Proton units. For these later commercial systems we are of course dependent on the suppliers in each instance.

Centres without information systems – if commissioning a new system, it may be helpful to ask that an export routine to RPV is included in the price. It should not add very much, the extraction should be quite simple.

Background

The project was developed by RIXG, the Renal Information Exchange Group. A pilot project began in mid 2004, and in January 2005 was ready for beta testing in two centres. The reception was very good, and in mid 2005 the project was extended much more widely. Initial funding came from the Departments of Health of England, Scotland, and Wales. Joining centres now pay a small one-off amount for installation of the software and configuration of their system.

Contact us

The RPV project has a small steering group under the auspices of RIXG. Please contact Neil Turner or Keith Simpson with feedback or questions:

Neil Turner, 0131 242 9167, neil.turner@ed.ac.uk

Keith Simpson, 0141 211 4946, keith_simpson@compuserve.com

Need more leaflets or posters?

Dawn Hibbert, dawn.hibbert@ed.ac.uk 0131 242 9167

Try the system

www.renalpatientview.org – demo logins available from the home page.

Further information. The Renal Information Exchange Group, RIXG, is a multidisciplinary and multi-organisation body representing the entire renal community, chaired by Prof John Feehally. In addition to this project it is working to coordinate efforts on all aspects of renal IT. Read more about RIXG and the RPV project at www.renal.org/rixg.